A Girl & Her Auto-Immune Deficiency

I spent of a lot of my time as a child in and out of doctor’s offices. Whether it was my annual bronchitis, strange skin conditions, gastrointestinal problems or sleep apnea, I felt like I could never catch a break. Unfortunately, I spent a lot of time having to try and convince people of these problems. Most doctors would look at me and say, "Well she’s a young healthy and active young girl, maybe she’s just a hypochondriac. It felt like nobody was listening, it felt like I was alone. As I got older these problems didn’t just magically go away like many people had told me they would, in fact they often times got worse. When I was 16 I was diagnosed with a relatively rare auto immune deficiency in the United States known as Behcets Disease. I thought to myself, “Finally an answer, finally I can get some help”. Well, that comfort didn’t last as long as I had hoped. It turns out that there is no cure or treatment for Behcet’s unless you have what’s called a “flare”. And after numerous failed attempts to cope with my diagnosis through therapist appointments, Facebook groups, and support groups for rare diseases, I was left with that same feeling of being alone. I used to think to myself, “I wish there was a way that I could somehow meet a 16 year old girl with Behcet’s who’s just trying to navigate life.”. What I wanted was a friend who could understand. For the nearly 133 million people in the U.S. alone living with a chronic condition, it is scary, confusing, and frustrating. By creating an app that provides a platform to be connected with others just like you it creates a sense of security and normalcy. I want to be able to show people that no matter how isolated you feel in that moment, you are not alone.

I feel that there is no more urgent of a time for an app like this than right now. As I sit down and write this blog post, I am on my 14th day of isolated quarantine for Covid-19 in my childhood bedroom. I can personally say that even considering my past, this global pandemic has made me the loneliest I have ever felt in my life. The pandemic has devastated the lives of millions if not billions of people. Whether it be from contracting the virus, losing a loved one, or having to social distance from loved ones, it has pushed us all further from a sense of community and has left many feeling downright lonely. The U.S. Census Bureau recently reported that a third of Americans show signs of clinical depression and anxiety and warn that Covid-19 is likely to cause a significant increase in stress and psychological distress. These people need help, they need someone to talk to and to feel connected to the rest of the world regardless of what their health insurance is, where they live, what their medical condition is, or their socioeconomic status. I want to create You’re Not Alone to accomplish just that. I want them to know that there are others in the world that are like them. We are all struggling in our own ways right now whether it be mentally, physically, or emotionally. It is because of my own personal experiences with problems like these that I am certain You’re Not Alone has the potential to bring millions of people together and make a tremendous impact on the world.